Using Facebook to involve patients and the public in health research by Sophia Fedorowicz
Sophia Fedorowicz discusses the latest Centre for Health and Development (CHAD) paper ‘Using social media for patient and public involvement and engagement in health research: The process and impact of a closed Facebook group’ which can be accessed HERE.
Involving patients and the public in health service design and delivery is important. The National Institute for Health Research states that, in this context, members of the public include patients, potential patients, carers and people who use health and social care services as well as people from specific communities and from organizations that represent people who use services, people with lived experience of a health condition whether they are current patients or not [1]. More and more policy makers, commissioners, and research funders expect that patients and members of the public should be involved in the design and delivery of health research.
‘Nothing about me, without me’
Having experience of a health condition often prompts individuals to seek out information about it including prognosis and service provision, resulting in knowledge that is both clinical and experiential. Involving patients and the public in health research recognises this knowledge, and positions patients and members of the public as actors undertaking or contributing to research, rather than simply as its recipients or beneficiaries.
Traditional approaches to involving patients and members of the public in health research struggle with challenges such as limited representation. This is often due to the way that involvement is structured. For example, meetings are often hosted during the day which makes it difficult for those in full time work to become involved. People with limited mobility may be unable to travel for regular meetings outside of their communities and those with caring responsibilities cannot always guarantee they’ll be free at the same time every week.
What is our paper about?
In recent years CHAD carried out the RIsk COmmunication in NHS Health Check (RICO) study which involved using video stimulated recall interviews to explore and evaluate two cardiovascular disease (CVD) risk communication methods. You can find out more about RICO HERE and HERE.
Our paper is about how we used Facebook to support patient and public involvement and engagement (often termed PPI or PPIE) in the RICO study, alongside more traditional involvement methods. The decision was taken to do this because we noticed that traditional methods were excluding a lot of people with relevant experience of CVD that was important for the project to work.
How did we use Facebook to involve people?
CHAD initially worked with Redmoor Health who built a closed Facebook group called ‘Risk Communication of Cardiovascular disease in NHS Health Checks’ and invited people to join it by advertising on the Facebook pages of General Practices. After two months, the CHAD team took over management of the group. We ended up with 289 members in the group who supported the RICO project by giving feedback on our participant facing documents, aspects of our study protocol, such as the position of the camera in the consultation rooms, and how to recruitment more participants.
Using a closed Facebook group allowed people to provide feedback at a time that was convenient for them and in a way that was suitable for them. Some people voted on posts the researchers put in the group using the like button, some people were active in the comments in response to researcher questions.
What did we learn?
As a research team we learned a lot from taking this approach to patient and public involvement. We found that using a platform like Facebook, which is freely available and extremely popular, did help us to involve people who would otherwise have been excluded from traditional patient and public involvement activities due to experiencing difficulties with their health. We also learned that having this type of flexible and less intense type of patient and public involvement was beneficial for the project when getting feedback on many crucial things from a wide range of people.
We also experienced some challenges. The group was active from June 2017 to July 2019 and maintaining a group of this size for a prolonged period is difficult, and in future, we would allocate more time and resource to group management. We also acknowledge that not everyone has access to the technology and consistent internet connection needed to engage in a solely digital means of involvement.
Our recommendations
We felt it may be useful to put together some recommendations for others who may be looking into the possibility of using Facebook to support their patient and public involvement strategy in health research. Here is a quick summary but the full list of recommendations can be found HERE.
- Ensure that the group can be facilitated effectively through appointing a group co-ordinator, and do not underestimate the amount of time this takes.
- Invest in a long-term plan for the Facebook group to ensure sustainability of the group beyond the lifespan of the initial project, as involving people in dissemination activities is also important.
- Ensure that the purpose of the Facebook group is explicit and clear to group members to manage their expectations.
- Think about the times that the group will be monitored and work around what is more convenient for your members. This will help you to get feedback quickly and from as many people as possible.
[1] National Institute for Health Research. Briefing notes for researchers—public involvement in NHS, health and social care research. 2021. https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371
